This needs to be said. In my brief experience as a newbie here, I have seen the best and unfortunately the worst of people too.
I was open and honest in my first post on 5 Sept (To Be or Not to be MS), sharing my story. Like so many still-to-be-diagnosed sufferers I am at a vulnerable stage, especially emotionally; which is why I joined the forum in the first place. When I posted another message on 8 Sept (A Little Knowledge…), it was to express my distress at what I felt was a breach of confidence, and one that could happen to others if care is not taken. Perhaps, on reflection, I could have been more sensitive, but nothing in that message was outrageous or factually incorrect.
For the record, as anyone can see on the forum threads, ‘Tumefactive Demyelinating Lesion’ had never been mentioned in any of my previous posts; it was indeed new information, disclosed by someone else after the exchange of personal messages which were meant to be private. If I’d intended for my brain damage to be discussed in public and in more detail, I’d have started out public and not private. My response when it was put onto the forum for discussion was therefore emotionally charged, but in control. It was not meant to be inflammatory, and nor was it a character assassination, as has been suggested - in fact I also said positive things about the poster because they obviously had helped a lot other people. I appreciate that an apology was made and I too regret that she was upset.
Putting my message to one side, nothing, and I mean nothing could have prepared me for the torrent of abuse I suffered in response. I urge all newbies to look at the thread again (8-11 Sept) and make up their own minds whether or not the responses were excessive. They were upsetting to read and felt like a frenzied attack, tantamount to bullying: I’ve been told to be ashamed, been told I’m a troll, and even been told IN CAPITAL LETTERS to ‘P*** OFF!’ (Incidentally, this last abusive post which breaks the rules of the forum, has been given 8 ‘likes’, and at no stage during the three-day frenzy did a moderator step in. It felt like a beating in a dark alleyway. I was the person being assasinated. When I’d recovered and drawn up enough courage to respond to all sorts of accusations, I couldn’t because the thred had been locked; hence having to reply here as a new thread.
During my absence from the forum, and completely without my knowledge, my partner/carer wrote a reply as ‘Serena B’, in an attempt to fend off the attack, but they too were set upon by what was turning into an organised mob. At no point did I know my partner was actually ‘Serena’, but I love my carer for trying to act as my only shield.
This will be my last post, and I’d like to finish by saying that despite co-ordinated victimisation on the forum I have come out stronger. A good friend of mine, someone living with MS for nearly twenty years, told me that she is an optimist and advised me to always ‘Seek light, even in the darkest of corners’ and I am learning from her to do the same.
Before I do go, I offer this advice to new newbies: if you do decide to join the forum, don’t do it for a diagnosis . There are qualified neurologists out there to help do this. Also, if you are the type of person who says exactly how you feel, warts and all, be prepared to take some heavy flack. I came here for support but have never felt more alone. Once, I was seahorse…
But now I am Spartacus.